In the beginning of year 2000. A doctor sent us to Akademiska, the University Hospital in Uppsala.
Hugo was 1y 4m. a healthy, always smiling and strong little person. But his great toes where short and bent inwards, his left thumb was missing a joint… And the reson the doctor sent us to Akademiska was those signs and the strange lump that appeared on the back of his head.
This was before we had internet at home. Even though all those characteristics signs of FOP the team at Akademiska didn’t believe it was FOP. That second opinion… When looking back it… is both a good and a bad thing. Good thing for FOP in Scandinavia that it happend, but also a very bad thing for Hugo. His doctor sent us to Akademiska for a specialist team to look at him. She suspected ”somethings” but she wasn’t sure (she never told us what she suspected, she wanted a second opinion first) but they didn’t belive it was FOP as she did.
That is the reason I built up FOP Sweden. And all the things I done for FOP and Rare diseases during the years. To avoid that to happen again. But it is such a strange feeling that I all those years later is back at Akademiska, as one of the representatives from Rare disease org in Sweden. Collaborates with them so the rare disease center at Akademiska that are in the building up process, will become the best for the future.
Hejsvejs – Marie
Swish nummer 123 640 26 30.